Alex Sparrowhawk smiling in a room

In the 1980s and early 1990s, an HIV diagnosis was a terminal one. When effective treatment was finally found in 1996, everything changed.

I was 11 at the time, completely unaware how life-changing that medical breakthrough would be for me when I was diagnosed 15 years later. It was announced at that year’s AIDS conference in Vancouver thanks to those who fought for so long for more investment, more research and more compassion – many of whom didn’t live to see the change.

And they did change, almost overnight.

In the western world those meds were made available to many people within weeks. While, shamefully, three decades later large numbers in the global south still don’t have easy access to treatment and HIV remains a killer.

The theme of this year’s LGBT+ History Month is medicine and, as it comes to a close, it’s important to celebrate HIV treatment and all of us alive today because of it. At a time when so many from our community were dying, HIV treatment was crucial for turning the tide on HIV.

But, alongside celebration, this month also gives the opportunity for reflection and the time to acknowledge how horrific, brutal and unfair those darkest days of the AIDS crisis were.

Before treatment that worked and was well tolerated became available, there were lots of experimental treatments tried, including AZT which did more damage than good for some. Which meant there was a conflict. Some people with HIV tolerated it well, while others got very sick. But it was the only option in terms of treatment, which meant there was the wider question of: is it going to make me better, or is it going to make me worse?

People were taking multiple pills multiple times a day. Side effects were a huge issue for many, meaning some were also taking pills to tackle the side effects like diarrhoea and nausea. That meant it was often a case of choosing between quantity and quality of life, which is unimaginably difficult and something we’re so lucky not to have to consider today.

Because, thankfully, medical research and advancements means that things have improved hugely over the last 28 years. Including when I began treatment in 2009. I started almost straight away because what is known as my CD4 count – a key indicator of your immune system’s health – was extremely low.

There was a single pill available then, but because I had a history of depression they knew it wouldn’t be right for me. Instead, I began on four pills a day, one of which was massive and had to be kept in the fridge. Which meant I had to have a conversation with my flatmate about my diagnosis as there was going to be a pill bottle besides our wine and yoghurts.

Within three months I was what is known as undetectable, meaning levels of HIV in my blood were so low that they can no longer be detectable. This protects my immune system from damage and also means HIV can’t be passed on to anyone else.

But my CD4 count and overall health was much slower to improve, which worried me a bit. I felt like my health was vulnerable, but eventually that improved too and now I’m as healthy as anyone who isn’t HIV positive.

I stayed on that combination for five years. During that time the one kept in the fridge got reformulated which meant I could go back to keeping food in there. While two other pills were condensed into one. In fact, the progress and improvements ever since I started treatment, have been significant.

But I did start to experience gut-related side effects. Previously I had never been empowered to do anything about it and talk to my HIV doctor. But by that point I was volunteering on Terrence Higgins Trust’s forums for people living with HIV and telling other people to talk to their doctor if they had side effects – so it was time to take my own advice.

Then I moved onto one pill a day, which is still the case today. I didn’t think I minded taking three pills, but it’s much easier on one. Because it’s one pill bottle to travel with, or take on holiday, rather than three.

That’s why my advice to anyone living with HIV who has side effects is talk to your doctor. There’s nearly always an option, always something else. So don’t suffer in silence.

We’re in a really exciting space now with injectable HIV treatment which is given every two months and means you don’t even have to take one pill a day. There’s only one combination at the moment, but there’s more on the way – as well as longer acting medication more broadly. Can we develop pills you only need to take weekly? Is there an implant that could work?

That’ll open up so much freedom to people and, if we can get to the point where people can self-administer some of the long acting treatment, then that’ll be huge in making HIV an even smaller part of people’s lives.

Like with most of LGBTQ+ history, the story of HIV treatment includes huge adversity and sadness, a long fight for action and change, and then – finally – something that has changed so many people’s lives. Including mine.

I briefly mentioned it earlier on, but I can’t write about HIV treatment without talking about the game-changing, stigma-busting message that people living with HIV and on effective treatment, like me, cannot pass it on to their partners.

I hadn’t been working at Terrence Higgins Trust long when we started developing our ‘can’t pass it on’ campaign to take the robust evidence about HIV treatment’s ability to stop HIV transmission into the wider world. That work has been one of the most important and affirming of my life, and I’ve been privileged to talk about it on TV sofas and, during the pandemic, via Zoom.

I vividly remember seeing our then medical director’s face shared across Grindr alongside the message that people living with HIV and on effective treatment can’t pass it on. No ifs, no buts.

That message is so important because it gives you relief from fear. Relief from being thought of as infectious, relief from the worry of passing HIV on, the relief from anyone saying you had. I’ve been in two long-term relationships since my diagnosis, including with my current boyfriend, and it’s not even been a talking point after the initial discussion.

This is what LGBTQ+ History Month should be about. Acknowledging the past, celebrating progress where it’s been made and looking to the future to see what still needs to be done. We’ve come a long, long way in the fight against HIV but it’s not over.

We need access to HIV treatment for everyone who needs it, right across the globe. We need to ensure people living with HIV have quality of life not just an undetectable viral load. And we need to do everything possible to end new HIV cases in the UK by 2030, and people like me taking our treatment every day is an absolutely crucial part of that.

Alex Sparrowhawk is HIV and Ageing Manager at Terrence Higgins Trust.